5 reasons why entrepreneurship is the best solution for people with EB

When I told my family that I wanted to start my own web agency, they looked at me like “are you crazy?”. Well, maybe. At the time, I hadn’t graduated yet and I didn’t know how work life really was. I only knew that I had the motivation to start an adventure in another country. 

Finally, after graduating, I applied for a job in Luxembourg, because my boyfriend still had one year left to study, so I had to wait for him.

That was almost 3 years ago. So, what went wrong (or right eventually)?

I stayed 2 years working there, but the 6 months before I quit were horrible.

When you have EB, it is not only your skin that is damaged. Your inside body and your psyche can also be damaged (I am sure you know what I mean).

For example, when I’m stressed, my skin condition gets worse and painful. Pain doesn’t let you concentrate, like when you have a headache, you just want to rest.

Because of the pressure I had to endure at work, I got myself stuck into a stressful and depressing bubble.

During the last 6 months of my job, I was basically sick all the time. I had to ask for doctor certificates, so I could stay at home and rest. I was so depressed and felt like shit, wondering if I could ever return to my job or simply have a job at all. Then, what was meant to happen happened: I was forced to quit.

At the time, I was sad, but after that, I realized it was my only chance to start a new life and launch my own business.

Companies want efficient people

Most of companies want to make money. They only hire efficient people that will work many hours and bring them profitable contracts. So let’s face it: with most of EB types, it’s difficult to be efficient all the time. In a good day, you will be efficient maybe at 80%, in a bad day, maybe 50% and in a really bad day, not more than 30%. Working for someone who expects you to be efficient at 100% (sometimes more), will crush you mentally, because you won’t be able to do it, even if you try hard, because you are a warrior (I bet you are, but even warriors have their limits). As an entrepreneur you don’t have to be efficient, you just have to work and earn enough money to live decently.

EB needs time

In most cases, a workday starts at 9 am. It means that if you have to make bandages before getting dressed (like me), you need time to do that, so you have to wake up earlier. I usually need 30 min to sort out my skin and that’s because I don’t need a lot of bandages, but I’m sure some of you need way more than that to make it. It is really difficult to be that early at work when you must treat your skin before. Entrepreneurship gives you flexibility in terms of work time.

Your body needs to come first

In order to keep your sanity, physically as well as mentally, you must listen to your needs. If you work for a company, work comes first, and your own body will come secondly, or you might loose your job. But if you work for yourself, you can decide your work time, and put yourself first before your work. If you need to stay in bed, because you had a shitty night, you must be able to do that. If you need a nap in the middle of your workday, just do it. Being entrepreneur means being free to adapt your work according to your body needs. It will prevent stress situations from ruining your life.

Stay zen

Being an entrepreneur is not easy, but it gives you the freedom to do whatever you want. Nobody is there to judge you, telling you what you have to do. When you struggle with EB, you must be able to live your life at your own rhythm. By doing that, you can stay zen and have a good quality of life without stress, nor pressure.

Choose your workplace

This last reason depends on what kind of job you want to do. Being entrepreneur gives you the chance to choose where you want to work. Do you prefer to work from home? Or maybe to have a little office only for you? Or to go to a co-working space? It’s up to you! Working in a space where you feel good is very important to help you do your job peacefully and in a better way.

In conclusion:

Being an entrepreneur is not always easy, it requires self investment, work and dedication. It takes time to have a regular income, some jobs more than others. But the most important thing when you struggle with EB is to have a good, happy and peaceful life, without stress. And entrepreneurship will give you that.

Are you dealing with EB and are you thinking of becoming an entrepreneur? Leave a comment below :

7 thoughts on “5 reasons why entrepreneurship is the best solution for people with EB”

  1. Hey Cindy, great article!! I’m a social entrepreneur as I bring people together and celebrate the EB community. My charity MiaThrives bring awareness to Butterfly Children and our cause and supports families affected by EB.

  2. Wow… I am just starting to see this for real. I’m fighting for disability now that I am 40 and tired but I would so much rather start my own company and thrive now.

    1. Hi Mark,
      There’s still time for you to start your own company ! There are many activities you can start that doesn’t require a lot of energy. The trick is to find the activity you can simply do at home and turn into a business plan ! Any idea can be convertible in business, just keep that in mind ?

  3. Hello Cindy,

    When I came upon this article it made me feel good and feel like I’m not alone in this situation. I’ve never worked in my life because of my EB, but I’ve studied at college and haven’t graduated yet because I need to do 600 hours of volunteer work for my program which is Social Service Worker program, but no job interviews have accepted me and withdrew me from the class. Now I’ve been out of college for 7 months Because no ones accepted me.
    Honestly though, at first I was upset but now I’m actually happy no one accepted me. The program is great, don’t get me wrong, but it’s so very stressful and it effected my weight and skin badly. I don’t want to make this long on you but I honestly don’t know what to do now because when I start something I like to finish it and I want to graduate but I don’t think after graduating I can work as an SSW.

    Sorry to tell you my whole life story, but I felt comfortable to open up about it with you ☺️
    Thank you for your time!

    Sincerely Mary.

    1. Hello Mary,
      Before I started on my web design degree I also tried a social service degree. I quickly gave up cause how was I suppose to help people with problems if I had problems myself with my everyday life? I think when you struggle with EB, you just have to adjust your work and do something you can feel good and relax, without other outsourced problems you know…And please, you don’t have to finish you degree just to start your own business. As I said, you just need to turn an idea into business plan, and start in your own rhythm and grow step by step 🙂 if you want to discuss further possibilities fell free to reach me out on my instagram or facebook @cindymateus or by email on letstalk@cindymateus.com 😀 I will be glad to chat with you ! 🙂

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